Organizing institutions to support family and community care

One of my boys now likes to eat yogurt that is not stirred. This is a new “like”. So, it took me by surprise.

I learned about it one day when I did what I normally do when giving my young son his yogurt – I stirred it! Big mistake. He let me know in no uncertain terms. And later my wife filled me in on the finer points and how she’s been dealing with it. This new way (of liking) emerged while I was working in Singapore for a couple of weeks.

I admire my wife’s deep knowledge of our sons, and I am always struck by how much can change in a couple of weeks, or more to the point how many little things can change in that short time. I always feel a little sad at such moments; a pang of loss grabs hold of me.

Mostly though I am struck by the adaptability of my family and how we continue to find ways to love and care and deal with messy bits of our lives together. The yogurt was no big deal, me keeping up with the rhythm of our family life at home is. A central tenet of ABCD is that care is the freely given gift of the heart one person to another, and I firmly believe that both my wife and I care equally deeply for our children and each other. But care comes in particularities, it demands regular presence, and that’s our dilemma. My sons forgive me my need for catch-up periods, because they know I will work to catch up. But it’s a dilemma that needs negotiating in our house.

Our dilemma is a bit similar to that faced institutions I think. Particularly for professionals dealing with irregularity and distance from the context of normal living. While I draw a parallel, the difference of course between my family and an institution is profound, among many other distinctions, I am not a salaried stranger I am Dad. Still whether in a family or an institution, four possibilities present in the yogurt scenario with young children, and they develop from surface caring to deep caring:

  1. The yogurt is given by the adult on their terms with no attention to the wants or likes of the child. The child may even be chastised for protesting.
  2. The yogurt is given by the adult in a way the child dislikes, on the basis of a well intended assumption of how the child would like it, but the assumption is corrected by the child, and the next time the adult adapts. The interaction also acts as a good reminder to the adult of the importance of regularly checking in, because preferences change.
  3. The yogurt is given to the child as they like it, because the adult is so in tune with the child’s likes and dislikes.
  4. The yogurt is given to the child with a minimum amount of interruption by the adult and the child is supported to decide for example whether they want to stir, or not.

Ultimately we want the child to feel free to get his own yogurt; so I appreciate there are many other levels of depth after the four listed.

But the point I want to make here is that beyond a certain scale, and proximity a human being, regardless of how caring they are personally, will struggle to go deep and personal because the system will prevent them. Though struggle they should; that’s the deal with a caring vocation. However, it’s not that simple, the four levels of response suggested above offer a rudimentary test as to whether our ways of organizing institutional attempts at caring are forced into surface level impersonal responses or not. I am very struck by how often I hear services talking about surface level caring as though it were a good thing. Depersonalization and standardization of care is no care at all. By framing superficial programmes that lack particularity and knowledge of the person as though they are the high-water mark of equality, we create a form of counterfeit care; then conceal the act from public and professional oversight.

Recent responses to institutionalization around the world, especially in Europe, Oceania and North America have involved asking staff who work in human services institutions to alter their caring approaches to become more person-centred and less prescriptive. I know that approach works for me on my return home from work abroad, because of the small home scale context; because I’m Dad; and because I work a fair bit at home to nourish contact. But there’s the rub with person-centred care, it can’t simply be achieved by staff changing practice (though that will help), because the issue is largely the context. Therefore, change in human service institutions must also involve decommissioning services that have become too big; impersonal and congregated, and shifting the orientation back towards family and community.

An example of a service that did this is the Starfire Centre: https://www.starfirecincy.org in Cincinnati. Their mission is to:

Starfire is a groundbreaking organization working to build better lives for people with developmental disabilities, such as Down syndrome, autism, and cerebral palsy. We do this by increasing social connectivity through meaningful relationships and by working to remove barriers to opportunities in the community where people can be known for their gifts, not their disability.

Formerly a large daycare centre for people with intellectual disabilities, they have since decommissioned that service, and turned the centre towards the community and the local economy, in three distinct ways:

  1. The majority of the centre’s space is now offered to the wider community as affordable work space filled by local entrepreneurs/small businesses;
  2. The people who are served by Starfire are resourced with an annual budget to go do things they enjoy in their community, and that contributes to the wellbeing of their community. Thereby enabling them to connect as neighbours with gifts to offer and receive.
  3. Staff of the centre have upcycled roles from what they would have previous done; they now journey alongside citizens who previously were at risk of not having their gifts recognised or received (due to labelling) to discover their gifts and find places of welcome in their community.

 

Just like my family face our own dilemmas, institutions and the people they serve, face theirs. But institutions don’t care, people do; when institutions organize like factories instead of families they stifle their people from caring. It is nice to know that at least some institutions are coming to understand the challenge before them: not just to make their institutions more person-centred, but also to support the people they serve to be interdependent at the centre of a natural and welcoming community.

Cormac Russell

 

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2 Comments
  • I really like this Cormac, almost a year ago Smile, a group of adults with special needs were looking for a new base, DMBC needed the land for housing. Our Bentley Community library offered them a room, they have integrated with our library, engaged with the wider community. We have an honest open relationship with Smile, respecting each others needs and working out any changes we need to make. Some people had and still do have reservations about the new arrangements but the benefits are many for the group and the community. We have very few resources, no extra money, we do have community members paid and unpaid who will go the extra mile, think creatively and try to stop status quo from doing things to us to save them money.
    Our council is doing it’s best to work the best way it can despite massive cuts in budgets.
    The following views are my own and not written in stone. Based on over fifty years travelling alongside my fellow community members. There are processes, structures and Pathways in education that can provide opportunities for all, from the Cradle to the Grave, but there are some people, who for various reasons cannot access these opportunities. Decades of work, reasearch, billions of money, policies made, strategies planned structures changed and yet the same questions are being asked 50yrs on, how to make a fairer society and opportunities for all from the Cradle to the Grave. Looking back over the years there is world wide, well documented information, about the work of Alongsiders/connectors within Education, could these posts that work informally with the whole community family be the bit that can connect and in some lives repair, the circle of life.
    Social Care is under the spotlight in relation to CCG, NHS Public Health, and how it relates to the Voluntary, Faith and Community sector. I fully agree that people are the biggest resource there is. If unpaid workers are being asked to take more responsibility for Social Care, they need some resources, the biggest one being, interagency, partnerships support and training also recognition for their work. There are many opportunities for pre-school education, and for work with parents, by law every child starts formal education at five, therefore the primary school has an opportunity to engage with parents or carer’s some of who with the right encouragement often join in school social activities, that can lead from, a cuppa tea to a degree, it also opens up possibilities for stronger links for the school to tap into the support networks outside school, opening opportunities for all kinds of resources in the school neighbourhood. There is a paid role in the catchment area of the secondary school, main focus being children, young people and their families, trained in Adult community learning, so that the process and educational rigour language of education is understood, therefore the worker is seen as part of the Education system working in and out of school.
    Audrey Thompson
    29/3/19

    March 29, 2019 at 10:24 pm
  • Anna Jeronymides
    Reply

    When will they listen and when will they ever learn from all that we as parents know, from living our lives together on a daily basis, with all our love and tender aand loving care, as parents who love our children and just do what we can to make life the best it can be, and able to communicate and understand in ways no professional is ever in a position to be, because they have not lived the life of our children, they have not learnt what we know by experience and by intuition and because We Care, and We Love as parents without any conflict of interest, with our child and our children close to our heart, precious to us, and with all that we ever seek to achieve is for our child, our children to get and to have whatever they need, because it pains us to see anything less than the best for them. We have a dialogue and we have a conversation that is intricate and is much more than what they say, it is every sign and in every gesture that we can read. Intuition and intuitive response is a language that we have learnt to speak, and every other possible strategy and means of communication has to be used and available, sometimes we just know, like with the spoon and the yogourt, sometimes a facial expression, a turn of the head, a laugh a smile or a frown, and sometimes we do not know, but that is why AAC exists and has to be used, and even then even yes and no and maybe and not sure what to say if
    this is also relied on, cannot be with a stranger or SALT or other professional who does not know the person, has no familiaru]=ity or understanding enough to know when and if they have actually interpreted the non verbal communication accurately, and in my experience two SALTS that I know and should know better, cannot expect to accurately interpret or understand anything without knowing the person and being familiar with them, and even greater the danger of a professional Leading the conversation and asking yes and no questions to write what the hell they like, to meet and to suit their own wants and needs and convenience as professionals or cover their backs, mislead and mistreat and lie and make huge and inaccurate assumptions and huge and inaccurate statements, having failed
    to do their job and simply to cover their backs for their own failures.

    April 2, 2019 at 2:22 pm

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